JMIR癌症

基于网络的干预对减轻新诊断的睾丸癌患者痛苦的作用:混合方法研究

2022 - 10 - 28 - t09:45:03内

背景:睾丸癌诊断后立即出现痛苦是很常见的。由于复杂的因素，包括不同的应对策略和社会性别规范的影响，历史上很难让人们参与到减轻痛苦的护理模式中。现有的支持特别侧重于睾丸癌的长期幸存者，在诊断后不久，对患有痛苦的个体的年龄适当和性别敏感的支持的需求没有得到满足。目的:我们评估了基于网络的干预，Nuts &螺栓，旨在提供支持和减轻痛苦后诊断睾丸癌。方法:采用混合方法设计来评估坚果的可接受性、可行性和影响;在痛苦中，我们随机分配最近诊断出睾丸癌的参与者(1:1)使用坚果和amp;在同意时(早期)或1周后(第8天;<我> < / i >延迟)。参与者在4至5周的时间内完成了一系列问卷调查，以评估痛苦程度(由国家综合癌症网络痛苦温度计[DT]测量; scored 0-10), anxiety, and depression (Hospital Anxiety and Depression Score [HADS]–Anxiety and HADS-Depression; each scored 0-21). The primary end point was change in distress between consent and day 8. Secondary end points of distress, anxiety, and depression were assessed at defined intervals during follow-up. Optional, semistructured interviews occurring after completion of quantitative assessments were thematically analyzed. Results: Overall, 39 participants were enrolled in this study. The median time from orchidectomy to study consent was 14.8 (range 3-62) days. Moderate or high levels of distress evaluated using DT were reported in 58% (23/39) of participants at consent and reduced to 13% (5/38) after 1 week of observation. Early intervention with Nuts & Bolts did not significantly decrease the mean DT score by day 8 compared with delayed intervention (early: 4.56-2.74 vs delayed: 4.47-2.74; P=.85), who did not yet have access to the website. A higher baseline DT score was significantly predictive of reduction in DT score during this period (P<.001). Median DT, HADS-Anxiety, and HADS-Depression scores reduced between orchidectomy and 3 weeks postoperatively and then remained stable throughout the observation period. Thematic analysis of 16 semistructured interviews revealed 4 key themes, “Nuts & Bolts is a helpful tool,” “Maximizing benefits of the website,” “Whirlwind of diagnosis and readiness for treatment,” and “Primary stressors and worries,” as well as multiple subthemes. Conclusions: Distress is common following the diagnosis of testicular cancer; however, it decreases over time. Nuts & Bolts was considered useful, acceptable, and relevant by individuals diagnosed with testicular cancer, with strong support for the intervention rendered by thematic analyses of semistructured interviews. The best time to introduce support, such as Nuts & Bolts, is yet to be determined; however, it may be most beneficial as soon as testicular cancer is strongly suspected or diagnosed.

基于web的前列腺癌特异性整体需求评估(CHAT-P):从概念到临床实践的多方法研究

2022 - 10 - 19 - t09:45:03内

背景:前列腺癌患者会经历疾病及其治疗的直接和长期后果。它们既需要对复发或进展进行长期监测，也需要进行随访，以确定和帮助管理心理和身体方面的影响。整体需求评估旨在确保以患者为中心的持续癌症护理。然而，基于纸张的通用工具在癌症服务中的应用有限，几乎没有证据表明它们的影响。随着远程护理提供方法的扩展和提高通用工具的价值，我们开发了一个基于web的综合整体需求评估自适应工具-前列腺(CHAT-P)，专门用于前列腺癌。本文描述了CHAT-P开发的背景、概念基础和设计方法，从最初的概念开始，到准备部署。通过这种叙述，我们试图为扩大关于创新数字系统的联合生产过程的知识体系做出贡献，这些系统具有增强癌症护理提供的潜力。方法: hat - p的开发遵循合产原则。前列腺癌患者和医疗保健专业人员参与了这一过程的每个阶段。测试在5年的时间内迭代进行。 An initial rapid review of patient-reported outcome measures identified candidate items for inclusion. These items were categorized and allocated to overarching domains. After the first round of user testing, further items were added, improvements were made to the adaptive branching system, and response categories were refined. A functioning version of CHAT-P was tested with 16 patients recruited from 3 outpatient clinics, with interviewers adopting the think-aloud technique. Interview transcripts were analyzed using a framework approach. Interviews and informal discussions with health care professionals informed the development of a linked care plan and clinician-facing platform, which were incorporated into a separate feasibility study of digitally enhanced integrated cancer care. Results: The findings from the interview study demonstrated the usability, acceptability, and potential value of CHAT-P. Men recognized the benefits of a personalized approach and the importance of a holistic understanding of their needs. Preparation for the consultation by the completion of CHAT-P was also recognized as empowering. The possible limitations identified were related to the importance of care teams responding to the issues selected in the assessment. The subsequent feasibility study highlighted the need for attention to men’s psychological concerns and demonstrated the ability of CHAT-P to capture red flag symptoms requiring urgent investigation. Conclusions: CHAT-P offers an innovative means by which men can communicate their concerns to their health care teams before a physical or remote consultation. There is now a need for a full evaluation of the implementation process and outcomes where CHAT-P is introduced into the clinical pathway. There is also scope for adapting the CHAT-P model to other cancers.

印第安纳州成人癌症患者的COVID-19诊断和死亡风险:回顾性队列研究

2022 - 10 - 06 - t10:15:03内

之前的研究通常在小样本量的单中心进行，发现癌症患者因SARS-CoV-2感染引起的COVID-19而经历更严重的后果。尽管早期检查显示癌症患者出现严重后果的风险更大，但风险增加的程度尚不清楚。此外，以前的研究通常没有使用人口水平的数据，特别是在美国。鉴于对人群有强有力的预防措施(如疫苗)，有必要使用对电子病历的强有力的人群水平分析来检查因SARS-CoV-2感染而导致癌症患者风险的增加。本文的目的是评估近期确诊的成人癌症患者中SARS-CoV-2感染与全因死亡率之间的关系。我们对2019年1月1日至2020年12月31日期间新诊断的癌症成年人进行了一项回顾性队列研究，使用与全州SARS-CoV-2检测数据库相关的电子健康记录。主要结局是全因死亡率。我们使用Kaplan-Meier估计器来估计COVID-19期间(2020年1月15日至2020年12月31日)的生存。我们进一步在多变量Cox比例风险模型中，将SARS-CoV-2感染建模为时间依赖暴露(不朽时间偏倚)，调整临床和人口统计学变量，以估计新诊断的癌症成人患者的风险比(HRs)。使用上述方法对具有癌症分期信息的个体进行敏感性分析。 Results: During the study period, 41,924 adults were identified with newly diagnosed cancer, of which 2894 (6.9%) tested positive for SARS-CoV-2. The population consisted of White (n=32,867, 78.4%), Black (n=2671, 6.4%), Hispanic (n=832, 2.0%), and other (n=5554, 13.2%) racial backgrounds, with both male (n=21,354, 50.9%) and female (n=20,570, 49.1%) individuals. In the COVID-19 period analysis, after adjusting for age, sex, race or ethnicity, comorbidities, cancer type, and region, the risk of death increased by 91% (adjusted HR 1.91; 95% CI 1.76-2.09) compared to the pre–COVID-19 period (January 1, 2019, to January 14, 2020) after adjusting for other covariates. In the adjusted time-dependent analysis, SARS-CoV-2 infection was associated with an increase in all-cause mortality (adjusted HR 6.91; 95% CI 6.06-7.89). Mortality increased 2.5 times among adults aged 65 years and older (adjusted HR 2.74; 95% CI 2.26-3.31) compared to adults 18-44 years old, among male (adjusted HR 1.23; 95% CI 1.14-1.32) compared to female individuals, and those with ≥2 chronic conditions (adjusted HR 2.12; 95% CI 1.94-2.31) compared to those with no comorbidities. Risk of mortality was 9% higher in the rural population (adjusted HR 1.09; 95% CI 1.01-1.18) compared to adult urban residents. Conclusions: The findings highlight increased risk of death is associated with SARS-CoV-2 infection among patients with a recent diagnosis of cancer. Elevated risk underscores the importance of adhering to social distancing, mask adherence, vaccination, and regular testing among the adult cancer population.

多发性骨髓瘤患者旅程的特征:定性回顾

2022 - 09 - 22 - t09:30:03内

多发性骨髓瘤(MM)患者的经历是多方面的，个体之间差异很大。目前已发表的关于MM患者视角和治疗的信息有限，因此很难深入了解患者对该疾病的需求。在本综述中，采用了一种联合研究方法(即回顾已发表的文献和社交媒体帖子)，以深入了解患者对MM的负担和治疗、COVID-19大流行的影响以及MM对MM患者护理人员的影响的观点。与此同时，研究人员还搜索了来自6个患者倡导网站和YouTube的社交媒体帖子的患者报告信息。对患者倡导网站和YouTube的回顾针对患者报告的信息，这些患者自我报告诊断为MM，并讨论了他们的MM经验及其治疗方法。结果:共纳入27篇文章和138篇文章(患者报告的信息包括来自76个人的数据)，来自两个来源的结果表明，患者经历了各种症状和治疗副作用，包括神经病、疲劳、恶心和背痛。这些可能影响与健康相关的生活质量，包括身体功能;情感、心理和社会健康;工作能力;和关系。 Patients valued involvement in treatment decision-making, and both the patient-reported information and the literature indicated that efficacy and tolerability strongly influence treatment decision-making. For patients, caregivers, and physicians, the preference for treatments was strongest when associated with increased survival. Caregivers can struggle to balance care responsibilities and jobs, and their HRQOL is affected in several areas, including emotional-, role-, social-, and work-related aspects of life. The COVID-19 pandemic has challenged patients’ ability to manage MM because of limited hospital access and restrictions that negatively affected their lives, psychological well-being, and HRQOL. Unmet patient needs identified in the literature and patient-reported information were for more productive appointments with health care professionals, better-tolerated therapies, and more support for themselves and their caregivers. Conclusions: The combination of published literature and patient-reported information provides valuable and rich details on patient experiences and perceptions of MM and its treatment. The data highlighted that patients’ HRQOL is impeded not only by the disease but also by treatment-related side effects. Patients in the literature and patient-reported information showed a strong preference for treatments that prolong life, and patients appeared to value participation in treatment decisions. However, there remain unmet needs and areas for further research, including treatment, caregiver burden, and how to conduct appointments with health care professionals. This may help improve the understanding of the journey of patients with MM.

晚期膀胱癌患者及其护理人员的未满足需求感知:使用美国社交媒体数据的信息流行病学研究

2022 - 09 - 20 - t09:30:02内

背景:局部晚期或转移性膀胱癌(BC)，通常被称为晚期BC (aBC)，预后非常差，除了其身体症状外，还与情绪和社会挑战有关。然而，很少有研究从患者和护理人员的角度评估aBC的未满足需求和负担。信息流行病学，即基于互联网健康相关内容的流行病学，可以帮助获得更多关于患者和护理人员aBC经验的见解。目的:本研究旨在通过对社交媒体帖子的混合方法分析，确定aBC患者及其护理人员的主要讨论主题和未满足的需求。方法:在2015年1月至2021年4月期间，使用aBC的特定关键词从美国地理定位网站收集社交媒体帖子。自动自然语言处理(正则表达式和机器学习)方法用于过滤不相关的内容并识别患者和护理人员的逐字帖子。使用biterm主题建模对逐字帖子进行分析，以确定主要讨论主题。通过2位独立的注释者，用定性研究的方法进一步探索难点或未满足的需求，直至概念饱和。结果:262名患者共发表688篇文章，679名护理人员共发表1214篇文章讨论aBC。对340个随机选择的患者岗位和423个随机选择的护理人员岗位的分析发现，患者中有33个独特的未满足需求类别，护理人员中有36个。 The main unmet patient needs were related to challenges regarding adverse events (AEs; 28/95, 29%) and the psychological impact of aBC (20/95, 21%). Other patient unmet needs identified were prognosis or diagnosis errors (9/95, 9%) and the need for better management of aBC symptoms (9/95, 9%). The main unmet caregiver needs were related to the psychological impacts of aBC (46/177, 26.0%), the need for support groups and to share experiences between peers (28/177, 15.8%), and the fear and management of patient AEs (22/177, 12.4%). Conclusions: The combination of manual and automatic methods allowed the extraction and analysis of several hundreds of social media posts from patients with aBC and their caregivers. The results highlighted the emotional burden of cancer for both patients and caregivers. Additional studies on patients with aBC and their caregivers are required to quantitatively explore the impact of this disease on quality of life.

病人对健康信息共享观点的公共审议过程:评价性描述性研究

2022 - 09 - 16 - t09:30:02内

精准肿瘤学是个性化医疗发展最快的领域之一，也是众多数据密集型领域之一。以患者的观点为依据的健康信息共享政策可以帮助组织将实践与患者的偏好和期望结合起来，但许多患者在很大程度上不了解如何以及为什么共享临床健康信息的复杂性。目的:本文评估了公众审议的过程，以了解目前和以前的癌症患者在使用和共享精确肿瘤学背景下收集的健康信息方面的价值观和偏好。方法:我们对目前或以前诊断为癌症的患者进行了公开讨论。共有61名与会者出席了两次审议会议中的一次(第一次会议，n=28;会话2,n=33)。研究小组专家主持了两次教育全体会议，经过培训的研究小组成员随后促进了与小小组参与者的讨论。参与者完成了审议前和审议后的调查，测量关于精准肿瘤学和数据共享的知识、态度和信念。在信息会议之后，与会者以小组和全体会议的形式讨论、排序和审议了两种与政策相关的情景。在分析中，我们评估了我们制定审议会议的过程，参与者在这一过程中获得的知识，以及参与者在多大程度上利用复杂的信息进行推理，以确定政策偏好。 Results: The deliberation process was rated highly by participants. Participants felt they were listened to by their group facilitator, that their opinions were respected by their group, and that the process that led to the group’s decision was fair. Participants demonstrated improved knowledge of health data sharing policies between pre- and postdeliberation surveys, especially regarding the roles of physicians and health departments in health information sharing. Qualitative analysis of reasoning revealed that participants recognized complexity, made compromises, and engaged with trade-offs, considering both individual and societal perspectives related to health data sharing. Conclusions: The deliberative approach can be valuable for soliciting the input of informed patients on complex issues such as health information sharing policy. Participants in our two public deliberations demonstrated that giving patients information about a complex topic like health data sharing and the opportunity to reason with others and discuss the information can help garner important insights into policy preferences and concerns. Data on public preferences, along with the rationale for information sharing, can help inform policy-making processes. Increasing transparency and patient engagement is critical to ensuring that data-driven health care respects patient autonomy and honors patient values and expectations.

在线健康社区的知识获取与社会支持:一个在线卵巢癌社区的分析

2022 - 09 - 13 - t09:15:38内

背景:患者和护理人员广泛使用在线健康社区(OHCs)从同行那里获取知识。OHCs中提出的问题反映了参与者的学习目标，并在他们的认知复杂性水平上有所不同。然而，对参与者学习目标的主题和水平以及他们从ohc成员那里获得的相应支持知之甚少。目的:本研究旨在调查OHC患者和护理人员的知识获取情况。具体而言，我们调查了不同认知复杂性水平下具有学习目标的帖子的分布和主题，不同认知复杂性水平下为满足用户学习目标而提供的社会支持的类型和数量，以及社会支持对学习目标变化的影响。我们从最活跃的卵巢癌(OvCa) ohc之一收集了10年的讨论线索。采用定性内容分析和定量统计分析相结合的方法进行研究。基于Anderson和Krathwohl分类法，最初的带有问题的文章被手动分为三个学习目标中的一个，随着认知复杂性水平的增加，从低到高:理解，分析，评估。采用人工内容分析和自动分类模型来识别评论中的社会支持类型，包括情感支持和5种信息支持类型:建议，推荐，行为， 个人经历，意见。结果:原始数据集包含909个初始帖子和14,816条评论，用于分析的最终数据集包含560个带有问题的帖子和3998条评论。 Our results showed that patients with OvCa and their caregivers mainly used OHCs to acquire knowledge for low- to medium-level learning objectives. Of the questions, 82.3% (461/560) were either understand- or analyze-level questions, in which users were seeking to learn basic facts and medical concepts or draw connections among different situations and conditions. Only 17.7% (99/560) of the questions were at the evaluate level, in which users asked other OHC members to help them make decisions or judgments. Notably, OvCa treatment was the most popular topic of interest among all the questions, regardless of the level of learning objectives. Regarding the social support received for different levels of learning objectives, significant differences were found in the advice (F_2437.84=9.69; P<.001), opinion (F_2418.18=11.56; P<.001), and emotional support (F_2395.88=3.24; P=.01), as determined by one-way ANOVA, whereby questions at the evaluate level were more likely to receive advice, opinion, and emotional support than questions at the lower levels. Additionally, receiving social support tends to drive users to increase the cognitive complexity of the learning objective in the next post. Conclusions: Our study establishes that OHCs are promising resources for acquiring knowledge of OvCa. Our findings have implications for designing better OHCs that serve the growing OvCa community.

在黑色素瘤幸存者中检测复发性和第二原发黑色素瘤的自我导向综合癌症后护理干预:试点随机对照试验

2022 - 09 - 08 - t09:45:03内

背景:黑素瘤是一种常见且发病率不断增加的疾病。指南建议幸存者每月进行全身皮肤自我检查(tses)，以发现复发和新的原发性黑色素瘤。TSSE表现不佳，尽管有益处的证据。本研究比较了在过去60个月内接受第一期0 ~ IIC原发性皮肤黑色素瘤患者的心理健康和TSSE自我指导数字干预与常规治疗的效果。该随机临床试验在2家英国国家卫生服务医院(格兰pian的Aberdeen Royal Infirmary和剑桥的Addenbrooke’s)进行。被诊断为第一个0 - IIC原发性皮肤黑色素瘤的成年人(≥18岁)随机接受实现自我导向的综合癌症后护理(ASICA)，一种基于片剂的干预，促进和支持黑色素瘤幸存者的TSSE，或常规护理。假设ASICA可以在不影响心理健康的情况下，增加黑色素瘤患者的TSSE练习，并与对照组进行比较。主要的主要结果是黑色素瘤担忧(黑色素瘤担忧量表)、焦虑和抑郁(医院焦虑和抑郁量表)和生活质量(EQ-5D-5L)，以及在随机化后3、6和12个月通过邮寄问卷收集的次要结果。共240名新兵被随机(1:1)分为ASICA组(n=121, 50.4%)和对照组(n=119, 49.6%)。12个月时，两组对黑色素瘤的担忧无显著差异(平均差异:0.12,95% CI−0.6至0.84; P=.74), 3 months (0.23, 95% CI −0.31 to 0.78; P=.40), or 6 months (−0.1, 95% CI −0.7 to 0.51; P=.76). The ASICA group had lower anxiety scores at 12 months (−0.54, 95% CI −1.31 to 0.230; P=.17), 3 months (−0.13, 95% CI −0.79 to 0.54; P=.71), and significantly at 6 months (−1.00, 95% CI −1.74 to −0.26; P=.009). Depression scores were similar, being lower at 12 months (−0.44, 95% CI −1.11 to 0.23; P=.20) and 3 months (−0.24, 95% CI −0.84 to 0.35; P=.42) but only significantly lower at 6 months (−0.77, 95% CI −1.41 to −0.12; P=.02). The ASICA group had significantly higher quality of life scores at 12 months (0.044, 95% CI 0.003-0.085; P=.04) and 6 months (0.070, 95% CI 0.032-0.107; P<.001) and nonsignificantly at 3 months (0.024, 95% CI −0.006 to 0.054; P=.11). ASICA users reported significantly more regular (>5) TSSEs during the study year and significantly higher levels of self-efficacy in conducting TSSE. They also reported significantly higher levels of planning and intention to perform TSSE in the future. Conclusions: Using ASICA for 12 months does not increase melanoma worry, can reduce anxiety and depression, and may improve quality of life. ASICA has the potential to improve the well-being and vigilance of survivors of melanoma and enable the benefits of regular TSSE. Trial Registration: ClinicalTrials.gov NCT03328247; https://clinicaltrials.gov/ct2/show/NCT03328247

评估卫生专业人员和肺癌筛查计划网站上潜在参与者可获得的信息:横断面研究

2022 - 08 - 30 - t09:30:03内

背景:肺癌是全世界癌症死亡的主要原因。美国预防服务工作组(USPSTF)在2021年更新了肺癌筛查建议，将筛查年龄从55岁调整为50岁，并将用于估计一手卷烟总暴露量的包年数量从30年减少到20年。随着许多人使用互联网来查找医疗保健信息，了解哪些信息对于考虑肺癌筛查的人是可用的是很重要的。目的:本研究旨在评估卫生专业人员和潜在筛查参与者在肺癌筛查项目网站上获得的资格标准和信息。2021年3月，对美国学术(n=76)和社区医疗中心(n=75)的151个肺癌筛查项目网站进行了描述性横断面分析，其中包含卫生专业人员和潜在筛查参与者的信息。主要结果为潜在筛查参与者的资格标准的提出以及卫生专业人员关于肺癌筛查的可用信息的存在。次要结果包括介绍有关成本和戒烟的信息，包括在线风险评估工具，提及任何临床指南，以及使用多媒体展示信息。结果:几乎所有151个网站(n= 142,94%)都纳入了肺癌筛查的合格标准，年龄范围(n= 131,992.1%)和吸烟史(n= 141,493.4%)也纳入了肺癌筛查的合格标准。只有14.5% (n=22)的网站的年龄与最新建议一致，没有网站更新吸烟历史。一半的网站(n=76, 50.3%)提到筛查费用与所持有的保险类型有关。 A total of 23 (15.2%) websites featured an online assessment tool to determine eligibility. The same proportion (n=23, 15.2%) hosted information specifically for health professionals. In total, 44 (29.1%) websites referred to smoking cessation, and 46 (30.5%) websites used multimedia to present information, such as short videos or podcasts. Conclusions: Most websites of US lung cancer screening programs provide information about eligibility criteria, but this is not consistent and has not been updated across all websites following the latest USPSTF recommendations. Online resources require updating to present standardized information that is accessible for all. Trial Registration:

创建和实施用于提高后期临床试验应计收益的首席研究员工具包:开发和可用性研究

2022 - 08 - 25 - t09:15:03内

肿瘤临床试验的应计性仍然是一个挑战，特别是在COVID-19大流行期间。对于由国家癌症研究所资助的晚期临床试验，这些研究方案的开发是一个资源密集型的过程;然而，在整个国家临床试验网络(NCTN)中，优化试验启动后患者收益的机制还不发达。患者收益低可能导致临床试验过早结束，并最终推迟新的、可能挽救生命的肿瘤学疗法的可用性。目的:本研究的目的是为NCTN，特别是NRG肿瘤合作小组内的肿瘤临床试验研究人员正式创建一个易于实施的资源工具包，以优化患者收益。方法:NRG肿瘤学寻求正式开发一个资源工具包，用于NRG肿瘤学临床试验生命周期中的特定时间点。这些工具被清楚地描述，并涉及在计划、启动和应计期间促进研究首席研究员与科学和患者倡导团体的参与。社交媒体工具也被用来提高这种参与度。首席研究员(PI)工具包创建于2019年，随后在小细胞肺癌的NRG肿瘤/联盟NRG- lu005 II期或III期试验中进行了试点。PI工具包由NRG肿瘤方案运营管理委员会开发，并在NCTN内通过NRG/联盟LU005随机试验进行了测试。 Results: NRG Oncology/Alliance NRG-LU005 has seen robust enrollment, currently 127% of the projected accrual. Importantly, many of the tool kit elements are already being used in ongoing NRG Oncology trials, with 56% of active NRG trials using at least one element of the PI tool kit and all in-development trials offered the resource. This underscores the feasibility and potential benefits of deploying the PI tool kit across all NRG Oncology trials moving forward. Conclusions: While clinical trial accrual can be challenging, the PI tool kit has been shown to augment accrual in a low-cost and easily implementable fashion. It could be widely and consistently deployed across the NCTN to improve accrual in oncology clinical trials. Trial Registration: ClinicalTrials.gov NCT03811002; https://clinicaltrials.gov/ct2/show/NCT03811002